Parents’ greatest joy is watching their children grow and succeed, but what if you can’t see or hear them? This is the reality for 41-year-old Torbjörn Svensson, a man from Sweden who is both blind and deaf due to a rare genetic disorder. Despite his challenges, as a loving father, he spares no effort to ensure he doesn’t miss those precious moments in his children’s lives.
“It’s very important for me to be involved in my children’s lives… because my son needs to have his father by his side, getting my support,” he said in an interview with The Epoch Times. Svensson uses his Focus 14 braille display to facilitate communication through tactile sign language.
“I’m always trying to find solutions so we can be together. Being a father who is always present for his children is very important to me.”
Svensson suffers from Usher syndrome, a rare genetic disease that affects both hearing and vision, leading to partial or complete loss of hearing and visual impairment. He was diagnosed with Usher syndrome at the age of 28. Prior to that, he worked as a truck driver, living a “free and beautiful life.” However, as the rare disease began to take its toll, he gradually lost his vision and hearing.
“It changed my entire life, and I had to adapt to a completely different, restricted life,” he shared.
Living a “normal” life is nearly impossible for Svensson, but that doesn’t stop him from enjoying life. With two children from a previous marriage, his fiancée, and her two children, he continues to prioritize his role as a father. One of his favorite places to support his children is the soccer field.
In a video on Instagram, he shared the feeling of supporting his children while receiving the support needed to accomplish goals.
The proud father wrote in his Instagram story, “Participation. For the average person, this word may not mean much to you, but if you’re outdoors, it means everything. For me, being able to attend my son’s matches is priceless. That’s why I fight for participation, even though sometimes overcoming various challenges is very difficult.”
Svensson added that his efforts are not just for himself but to be present for his children.
To keep up with the game during soccer matches, he has a translator tapping his back to signal the “social tactile cues.” His white cane is also placed in front of him on the ground, so he doesn’t accidentally step onto the field during the game.
He emphasized the importance of help from family and interpreters.
“When I get the assistance I need, I can reach 110% of my abilities,” he said.
Despite facing challenges, moments spent with his children keep him moving forward.
“My children are a huge motivation for me to keep fighting,” he said. “It’s for them and the future I strive for. I’m very driven to improve my life and, at the same time, the lives of other deaf-blind individuals because there are so many amazing people who have never had the opportunity due to the lack of proper support.”
The original article titled “VIDEO: Dad With Rare Disorder Turns Deaf and Blind, Finds a Way to Not Miss Son’s Soccer Matches” was published on the English website of The Epoch Times.